I have been working with Miss M for almost two years now; she is a young adult who had a terrible fall while overseas a few years ago, and she has been left with a rather nasty brain injury. Miss M is one of the most personally and professionally challenging people I have had the privilege to conduct, and even in a month where we have had some ridiculously incredible functional breakthroughs I find myself unsure of where I am with her and having internal conflict after virtually every session.
Miss M has an incredible full-time carer, L, who Miss M and I are extremely lucky with. L is fantastic with Miss M - she has a very close and loving relationship with her that I am able to work through, yet is able to be objective, firm, and work with 'tough love' where Miss M's parents can't. L problem-solves with me and and reinforces the work done in CE sessions -- and when things don't go well, we help pull each other through the muck.
There is no getting around it; acquired brain injury is complicated -- especially when physical disability is accompanied by impairment to behaviour, personality, memory and other cognitive functions. When I first started working with Miss M, I saw so much potential for regaining functional mobility but was not sure if I was going to be able to work around her behavioural and cognitive impairment. I was not sure to what extent the behaviour was a result of the brain injury or was something that she had learned to use manipulate and control her circumstances and the people around her since the brain injury. The behaviour drastically impacted the presentation of the disability, so much that the physical impairment and the physical disability were incredibly mismatched. She yodelled and shouted jibberish as her main source of communication; otherwise she just parroted what was said. She cried and shrieked with 'pain' when anyone even mentioned touching or moving her hands, feet, or legs, so no therapy or splinting happened, and as a result her hands and feet are amazingly contracted and deformed. She had a very violent and aggressive streak that had required no provocation. She was not interested in actively participating in CE or therapy; not motivated, and refused to take part.
And yet she knew every word to every song, including recent pop music from after her brain injury, and we could sing together. Once I got over my own hang ups about what is appropriate when working with adults I found that through children's song and play I could interact with her and sometimes get her to do things with me; I frantically went through my notes from my student years in nursery and school groups looking for appropriate songs, added in 'camp songs' and pop songs and other movement games and suddenly there was a relationship. And with that relationship came my expectations around behaviour - not just with Miss M, but with her amazing family and wonderful carer as well - and with expectations and goals around behaviour came change - both good and bad -- think of a full strength adult hitting the 'terrible twos'.
We are working teach Miss M that being violent and aggressive is not acceptable -- she is strong, has good motor control, and is unpredictable and dangerous. At first this behaviour seemed random - no provocation required. A previous therapist had in fact capitalized on it early on -- rough play and play fighting was the only activity she would take part in and that was how he helped her find her body and movement after the accident. Now, by holding her down, restricting her movement, repeatedly telling her that she was hurting me (and yes I have had my share of bruises and scratches and bites and hair pulling and pinching courtesy of Miss M) I've started to see that she can stop being agressive if there is consistency around this. But more, I saw that she could learn - when I intercepted her aggression she would burst into apology and tears. I also confirmed that she could be manipulative - while she was apologetic and teary I would drop my guard and she would attack again. I also started to see that the violent behaviour was not random - frustration, confusion, pain, being frightened, being over something, needing some physical space were all triggers. Miss M has a very short fuse; and when she loses control she can't yet reel it in.
Now we are working to teach her that saying sorry and crying isn't enough, she has to choose not to repeat the behaviour -- and we are making progress. However, in some ways these improvements have made the behaviour harder to manage. We have seen intention and purpose in her rage -- this is incredibly hard to work with because we know that it is not just random brain injury lability, but directed violent anger -- very different. There are good days, days when we work well and have no fighting. I know that once Miss M loses her temper she is out of control, but because I feel that Miss M understands what she is doing and that she knows she is not behaving nicely, I feel my own anger rise when dealing with hers. It is very hard to physically restrain somebody who is attacking you when you are also managing your own anger and trying to be professional and appropriate. If she is on the floor or in her wheelchair I can move away; if we are in the pool or balanced on the edge of a plinth, my duty of care doesn't allow me to step away and I have to restrain her to protect myself while keeping her safe and managing my own temper. And I'll be honest -- I sit in the car and cry after these days.
When I say we have seen ridiculously incredible functional breakthroughs I am not exaggerating; in the last few months we have seen exponential improvements in spontaneous communication and vocabulary; we see memory and refection where previously there was none; we see the beginning of an ability to understand that there was an accident, that there has been a brain injury, that we are trying to help her get better. Miss M has gone from from swimming only with floaties and someone right beside her to independent swimming on her front and back. She has learned to roll onto her stomach (or more precisely to tolerate being there) and from rolling onto her stomach in a matter of a week has learned to get up onto her knees and to crawl, and from there to pull herself up into high kneeling and onto a plinth or the lounge. The other day she was in high kneeling and tried to put her foot on the floor as if to stand (if only her feet and ankles weren't so terribly contracted!!!). Her body is remembering what she used to be able to do and latent abilities are presenting gob-smackingly rapidly and spontaneously -- it is like watching normal deelopment in fast foward. And when these things happen we celebrate - Miss M's parents, L, and I all shocked and amazed, ecstatic to the point of tears, and Miss M caught up in the excitement of the moment.
And then I show up the next day, expecting to reinforce and repeat what we have achieved and Miss M will be in a mood, refusing to participate, crying, being aggressive. When this was what I arrived expecting it was hard, but I was prepared, and it was what was expected. But now I don't know what to expect, and I excitedly arrive, still on yesterday's high; we review videos so Miss M remembers and we get excited watching them. Then we try to do something and I get behaviour and refusal to try. And I am heartbroken and disappointed even though I know that this is the nature of this brain injury and that this is a part of the process for Miss M. And even though I know that any confusion, disappointment, frustration I feel is minute in comparison to the complex emotions that Miss M feels and has no real way of expressing. My disappointment and frustration sometimes clouds my thinking, it feels personal -- we have a relationship that has allowed her to develop and exceed everyone's expectations; I'm putting everything I have into these sessions, and she can't be bothered to try. And only hours later while debriefing with L, am I able to appreciate and understand and deconstruct what is happening, and to remember how far we have come, and to find energy to keep trying.
Miss M has an incredible full-time carer, L, who Miss M and I are extremely lucky with. L is fantastic with Miss M - she has a very close and loving relationship with her that I am able to work through, yet is able to be objective, firm, and work with 'tough love' where Miss M's parents can't. L problem-solves with me and and reinforces the work done in CE sessions -- and when things don't go well, we help pull each other through the muck.
There is no getting around it; acquired brain injury is complicated -- especially when physical disability is accompanied by impairment to behaviour, personality, memory and other cognitive functions. When I first started working with Miss M, I saw so much potential for regaining functional mobility but was not sure if I was going to be able to work around her behavioural and cognitive impairment. I was not sure to what extent the behaviour was a result of the brain injury or was something that she had learned to use manipulate and control her circumstances and the people around her since the brain injury. The behaviour drastically impacted the presentation of the disability, so much that the physical impairment and the physical disability were incredibly mismatched. She yodelled and shouted jibberish as her main source of communication; otherwise she just parroted what was said. She cried and shrieked with 'pain' when anyone even mentioned touching or moving her hands, feet, or legs, so no therapy or splinting happened, and as a result her hands and feet are amazingly contracted and deformed. She had a very violent and aggressive streak that had required no provocation. She was not interested in actively participating in CE or therapy; not motivated, and refused to take part.
And yet she knew every word to every song, including recent pop music from after her brain injury, and we could sing together. Once I got over my own hang ups about what is appropriate when working with adults I found that through children's song and play I could interact with her and sometimes get her to do things with me; I frantically went through my notes from my student years in nursery and school groups looking for appropriate songs, added in 'camp songs' and pop songs and other movement games and suddenly there was a relationship. And with that relationship came my expectations around behaviour - not just with Miss M, but with her amazing family and wonderful carer as well - and with expectations and goals around behaviour came change - both good and bad -- think of a full strength adult hitting the 'terrible twos'.
We are working teach Miss M that being violent and aggressive is not acceptable -- she is strong, has good motor control, and is unpredictable and dangerous. At first this behaviour seemed random - no provocation required. A previous therapist had in fact capitalized on it early on -- rough play and play fighting was the only activity she would take part in and that was how he helped her find her body and movement after the accident. Now, by holding her down, restricting her movement, repeatedly telling her that she was hurting me (and yes I have had my share of bruises and scratches and bites and hair pulling and pinching courtesy of Miss M) I've started to see that she can stop being agressive if there is consistency around this. But more, I saw that she could learn - when I intercepted her aggression she would burst into apology and tears. I also confirmed that she could be manipulative - while she was apologetic and teary I would drop my guard and she would attack again. I also started to see that the violent behaviour was not random - frustration, confusion, pain, being frightened, being over something, needing some physical space were all triggers. Miss M has a very short fuse; and when she loses control she can't yet reel it in.
Now we are working to teach her that saying sorry and crying isn't enough, she has to choose not to repeat the behaviour -- and we are making progress. However, in some ways these improvements have made the behaviour harder to manage. We have seen intention and purpose in her rage -- this is incredibly hard to work with because we know that it is not just random brain injury lability, but directed violent anger -- very different. There are good days, days when we work well and have no fighting. I know that once Miss M loses her temper she is out of control, but because I feel that Miss M understands what she is doing and that she knows she is not behaving nicely, I feel my own anger rise when dealing with hers. It is very hard to physically restrain somebody who is attacking you when you are also managing your own anger and trying to be professional and appropriate. If she is on the floor or in her wheelchair I can move away; if we are in the pool or balanced on the edge of a plinth, my duty of care doesn't allow me to step away and I have to restrain her to protect myself while keeping her safe and managing my own temper. And I'll be honest -- I sit in the car and cry after these days.
When I say we have seen ridiculously incredible functional breakthroughs I am not exaggerating; in the last few months we have seen exponential improvements in spontaneous communication and vocabulary; we see memory and refection where previously there was none; we see the beginning of an ability to understand that there was an accident, that there has been a brain injury, that we are trying to help her get better. Miss M has gone from from swimming only with floaties and someone right beside her to independent swimming on her front and back. She has learned to roll onto her stomach (or more precisely to tolerate being there) and from rolling onto her stomach in a matter of a week has learned to get up onto her knees and to crawl, and from there to pull herself up into high kneeling and onto a plinth or the lounge. The other day she was in high kneeling and tried to put her foot on the floor as if to stand (if only her feet and ankles weren't so terribly contracted!!!). Her body is remembering what she used to be able to do and latent abilities are presenting gob-smackingly rapidly and spontaneously -- it is like watching normal deelopment in fast foward. And when these things happen we celebrate - Miss M's parents, L, and I all shocked and amazed, ecstatic to the point of tears, and Miss M caught up in the excitement of the moment.
And then I show up the next day, expecting to reinforce and repeat what we have achieved and Miss M will be in a mood, refusing to participate, crying, being aggressive. When this was what I arrived expecting it was hard, but I was prepared, and it was what was expected. But now I don't know what to expect, and I excitedly arrive, still on yesterday's high; we review videos so Miss M remembers and we get excited watching them. Then we try to do something and I get behaviour and refusal to try. And I am heartbroken and disappointed even though I know that this is the nature of this brain injury and that this is a part of the process for Miss M. And even though I know that any confusion, disappointment, frustration I feel is minute in comparison to the complex emotions that Miss M feels and has no real way of expressing. My disappointment and frustration sometimes clouds my thinking, it feels personal -- we have a relationship that has allowed her to develop and exceed everyone's expectations; I'm putting everything I have into these sessions, and she can't be bothered to try. And only hours later while debriefing with L, am I able to appreciate and understand and deconstruct what is happening, and to remember how far we have come, and to find energy to keep trying.
